Wednesday, November 30, 2016

It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here ---> https://lillypad.lilly.com/?auth=76 I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating!

We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go for the second half of this year, and we're sort of still in it. If you recall, Drew lost a significant amount of his lung function over the summer before we identified the culprit - a fungal infection. We treated him with anti-fungal medication and he thankfully improved until there was a second unexpected drop near the start of the school year. He had gotten back up to 91, and then in September dropped back down to 78. We had discussions about what might be causing it and what we should do to treat him, and decided to temporarily stay the course on the anti-fungal medication until he reaches and maintains a baseline on it, giving us confidence that it is both working and that the infection is under control. You may recall (or maybe not) that he had a fungal infection last year around this time. We started the anti-fungals for 3mo and he improved, so we stopped the treatment, and then by June he had lost 30% of his lung function, maybe not so mysteriously after all. I suggested that perhaps we hadn't had the infection under control as we had originally thought and, like fungus does, it slowly crept back wreaking silent havoc. I want to make sure that we are confident that things are under control this time before we change course, as a newer article suggests that fungus can become quite resistant if treated, if the medications used to treat it aren't used properly. The options seem to be, per this article anyway, treat the fungus and increase its adaptive skills, or not treat it and allow the pathogen to settle in the lungs. Not treating wasn't an option for us because of the impact that it was having on his lung function.

It's complicated, this disease. We seem to have the bacterial load in his lungs under control. Most research shows that bacterial exacerbations are a leading cause of lung function decline and lung damage in CF. But once we finally got the achromobacter under control with years of treatment on inhaled antibiotics and steroids, we seem to have traded it for a fungal infection. Did we cause the fungal infection? Perhaps we did, there's not really a good way to say. Is it better to have a bacterial infection or a fungal infection? I would probably argue that a fungal infection is *better* given that these is little research that shows the impact of a fungal infection on the progression of disease. I do not know if there is evidence to support the contrary, or just lack of research on this altogether. Either way, I'm interested to learn more and hope that the CFF will continue to study this.

He's got a cold now, coughing in his sleep and when he's running around and playing. We've added extra treatments which has him crankier than ever, but it's necessary. We've been going in to clinic for PFT's every two weeks and his numbers are remaining pretty consistent - 78, 81, 82 - but I'm not so sure how things will look with this new cold, perhaps something he picked up when we were in clinic for one of those appointments. Despite their best infection control practices - recently even declaring that the spread of infection among patients in our clinic had come to a halt with new infection control practices, which is great news - going into the hospital remains one of the most dangerous places for Drew to be. There are lots of sick people coming here for care, and even though we wear a mask and don't touch anything, he always seems to catch something when we have to come here. We should be able to use home spirometers to monitor our lung function. We should be able to track our weight from home, and other symptoms, and communicate what we learn with our care team, eliminating the need for unnecessary visits, saving everyone time and money, and perhaps even improving health. Machine learning can enable this, and should. While our center was using the Orchestra platform (which is no longer), we did start to see a longitudinal view of patients health shared with the care team. We did improve inter-visit communication, and intervention at more appropriate times rather than just when we happened to have a visit scheduled. It didn't reduce the number of times that we *needed* to come into clinic but it could have. I highlight the word *needed* as this is an evidence based medicine metric, a guideline put forth by the CFF for all patients, and embraced by all clinicians, regardless of whether its the right thing for the patient. The care teams aren't interested in reducing clinic visits below the required 4x a year. Or maybe they are interested but just can't becasue the CFF uses this as an accreditiation metric, requiring them to do this or find a way to improve rather than working to understand, from patients, why they aren't coming in 4x/yr and how we might work together to optimize care and outcomes according to the patient priorities. Hopefully our learning network will fix this. I digress.

I hope he's well for the holidays. I got this crazy idea to take my family to NYC to see some cousins the week before Christmas. What crazy person wouldn't want to drive 24hrs over 3 days to spend a night in a matchbox sized hotel room to see family and New York City at Christmastime?! I'm sure traffic will be delightful. At least we can stream Christmas music in the car!

I hope he feels well enough to open gifts with excitement and delight on Christmas morning, and that we don't have to pull him away from new toys to do extra treatments. I'd love to, for just one day, forget all of the medical stuff. I'd love to wake up and not have a schedule. I'd love to go out to dinner and not worry about hand sanitizer and enzymes. I'd love for him to run around outside, maybe in the snow, and not come back inside having a coughing fit, and rather than breathing treatments, have hot chocolate while all of the clothes defrost into a puddle in my foyer.

I've declined antibiotics for him since September because I don't think he needs them. Maybe I'm wrong, but I'm trusting my gut this time. We will go there if we need to, but for right now, we will do our treatment and take our medicine and listen to our Christmas music and enjoy this holiday as much as we can.

Tuesday, November 8, 2016

This post originally appeared on LillyPad, a blog for Eli Lilly Pharmaceuticals, where I write as an ePatient Advisor

Editors Note: Over the next few weeks we will spend some time listening to the stories of some ePatients who have been collaborating together on ways to show the value and importance of patients as partners, collaboration for improvement, and connection & learning through “the network” for healthcare improvement. It’s important that these stories be told beyond our Google Hangouts or private Facebook groups or dinner tables and pushed more deeply into prominent places in our society because you can’t have culture change without collaboration and you can’t collaborate on what you don’t know about.

There’s this weird feeling that happens after I return from a health conference. I’m so full of new ideas, having spent several days away focused only on the things I’m working on, being around only people who share my passions in this space. I get to put aside breathing treatments and medication ordering and insurance fighting as I listen to amazing presenters share about the phenomenal work they’re doing, trying to translate what they’re doing to what I do, always considering ways that we might be able to help one another. I eat lunch with unlikely partners and I’m fascinated by the wealth of knowledge they bring, wondering how on earth I got so lucky to have the opportunity to learn from them. Sometimes I’m the one presenting, proud of my work, anxious to share with others the ways that I believe what I do can also help them and their communities. Then there is dinner where we pack up “work” for a while and build relationships, getting to know one another on a more personal level – our interests, passions, families and friends. There’s a buzz that fills your soul and lifts your spirit.

Through these conversations, we realize a shared humanity and how our lives really are the fuel for the work that we do.‌ When I hop on the plane to leave these meetings, I’m so full of energy and renewed hope. Then just like that, I am back to the rat race – preschool drop off, signing school folders, sporting events, field trips, breathing treatments and appointments and medications and worry. There’s a buzz at home too, but a very different buzz. I’m so grateful to be home to the hugs and the very important stories about who sat next to whom on the bus, trying to squeeze in dinner between homework and basketball practice, turning on a movie so that I can find five minutes of quiet to order the medication that we will run out of in three days. But no one here understands. Here, people are doing their jobs and living their lives. They didn’t get to experience what I just experienced, what changes me just a little bit every time it happens. And I realize that without this buzz at home I wouldn’t have the other.

There’s absolutely no question that I would trade everything to take cystic fibrosis (CF) away from my son and our family. There are days when I wish more than anything that I could go back to being “just a mom,” scheduling playdates and going on nature walks, not having to sit at home waiting to sign for this month’s medication delivery or change our plans due to an unplanned illness. Yes, CF is a horrible disease that just takes and takes. I cannot change the disease, but we can control how we respond to it.

CF has expanded my friend circle and my world view. I have such a deep appreciation for the experiences of others, and I often learn the most from the people I don’t agree with. This is what it means to be an advocate - loving so much that your heart could burst, and then channeling that love and balancing it against the fear of loss. There isn’t a right or wrong way to be an advocate, but it’s something that those of us in the trenches are uniquely qualified for. Everyone can stand up and tell their story in an empowering way, but sometimes diagnosis or disease progression pushes us closer to this. As we work in health care improvement as patient advocates, there’s a focus on data. But data, while it can persuade people, doesn’t always inspire them to act. To quote an amazing article on the power of storytelling, “To do that, you need to wrap your vision in a story that fires the imagination and stirs the soul.” This, I believe to be true.

I’m honored to be able to share my story with the world, one that challenges the paradigm for how you can work with patients and caregivers. ‌Our lived experiences with research can help to grow our collective understanding of the benefits and challenges of participation‌ – what is it that each of us want, and how can we collaborate to achieve that. Together, we can make the shift from reactive to proactive care. Together, we find answers and change outcomes.

The new musical Hamilton is a powerful story that celebrates our founding fathers, who launched a new era of government. I’d like to honor some of the “founding fathers” of a new era of patient partnership in health care. They have helped to create the foundation upon which this great community is being built. It is through our stories weaving the thread between us all that we will continue to learn and grow. Over the next few weeks, you will hear from advocates in both the diabetes and cancer communities sharing their stories related to the idea of patients as partners, collaboration for improvement, and connection and learning through “the network.” So, in the words of Lin-Manuel Miranda as Alexander Hamilton, “Let’s raise a glass to the four of us, tomorrow there’ll be more of us, telling the story of tonight.” We hope you enjoy our stories.

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org